23rd Infusion

I’m here posting this entry just hours after I finished my 23rd infusion. This infusion is special because it marks my last infusion on the Expanded Access Program (EAP). Since Myozyme has been approved by the FDA, Genzyme has been transitioning EAP participants to other programs. Some patients have gone on to have their treatments covered by their insurance companies while there are some like me who have to apply to the ICAP or International Charity Access Program.

The Philippines does not have the same insurance industry as the U.S. or Europe. Reimbursements for treatments like this is unheard of here. Heck, most people here don’t have health insurance much less something that can cover something as expensive as Myozyme.

The ICAP aims to help get treatment to patients such as I who have no means as of yet to continue treatments as expensive as this. We’ve applied for the ICAP and have gotten a 3 month grant for it.

The medicine isn’t here yet and the papers are still being worked out. Hopefully it arrives on time. Pray it arrives on time for the next infusion.

As for the actual infusion session it was pretty much the same as most. Nothing eventful. Oh, except waking up to have a cute resident come in and look at me before the infusions started. It sucks to be in a situation like that since your first impression is literally down the drain. There’s nothing as appealing as a newly woken person with all the things that are associated with a sleepless night. More on that later. Suffice to say.. I don’t think I made a good impression to that resident.

I did have a sleepless night because my stomach was painful. I finally couldn’t take it anymore and had to go to the bathroom at 4 a.m. and see if that can solve the stomach problem. Apparently it did.

So I fell back to sleep around 6 a.m. and got around only 2 hours of sleep.

Apart from that, the day went well. My lead doctor couldn’t come. She’s on a trip to Spain. So Dr. Lynn substituted for her. Of course I have my regular doctor and talking buddy Dr. Lani. I think over the course of the year I’ve been on treatment we’ve gotten to know each other well due to our conversations. Most of the time light, sometimes serious but always enjoyable. I really appreciate those conversations.

My regular nurse couldn’t make it as well so it was for two sessions in a row Carolle.

Oh, I had a bigger room this time since the regular rooms we use aren’t available. I really thought this room would be better since it was more expensive. Honestly it’s not. It’s just bigger. Most of the space you don’t really need. You just have a bigger hallway with a lot more cabinets. If you’re staying overnight, you just don’t need that extra closet space…

Here’s to the 23rd infusion and coincidentally I keep using Michael Jordan whenever I give my talks and I know end the EAP with his number. How cool is that?

One Reply to “23rd Infusion”

  1. Hi Juan,

    I’m thinking of you and hoping the paperwork moves along (many people here are working hard on this….Jamie M. is on the file and pushing as well).

    I have purchased the iMac and would love, one day, to iconference with you….I’m still a newbie with this, what do I need to give you so that we could chat?



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